Both of my daughters, 17 and 19 have sticklers syndrome, so does
their father and his oldest daughter. Except for my 19 year old
daughter, the other 3 were also born with cleft palates, all with
pierre rabin syndrome. I have a 21 year old son who does not have
sticklers syndrome or a cleft palate. My 19 year old also has
congenital cataracts, and a retinal detachment in her right eye, she
just had surgery 3 weeks ago to correct it, but the dr says she
probably will not regain much sight and that she will have to have
recurring surgeries. my 17 year old has some hearing loss in her left
ear, she will not regain that. the girls' father has had 9 knee
surgeries, because of osteo-arthritis in both knees, his first
surgery was when he was 32. I have tried to find out as much as I can
about sticklers syndrome, since my youngest daughter was born and
they told us she had it, I have been very frustrated by the small
amount of info i have been able to find out through the years, and
have found that i sometimes seem to have more info then any of the
dr's we've gone to have. I have read that Sticklers Syndrome is one
of the most underdiagnosed syndromes there is, and i can believe
that. Any info that i can gather, would be greatly appreciated, so
that i can help my girls or other people with the information, also
my grandchildren that i hope to have one day because they will
probably be born with it also. I hope to share my info with others
affected by this, so feel free to e-mail me and i will help as much
as i can.